The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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I love this New Podcast with Ron Davis 6/15/17

Discussion in 'General ME/CFS News' started by JaimeS, Jun 15, 2017.

  1. JaimeS

    JaimeS Senior Member

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    Feeling pretty awful today, folks, but I thought I would share this interview with you; it came out today.

    https://mendelspod.com/podcasts/last-major-disease-ignored-research-ron-davis-stanford-thinks-so/

    _________________________________________________________________

    Ron Davis, Director, Stanford Genome Technology Center

    Bio and Contact Info

    Chapters:

    0:00 “Wearing the cape” for ME/CFS

    4:27 Why the stigma?

    8:51 Developing the most definitive diagnostic test yet for the disease

    17:04 How do you convince the world ME/CFS is a real disease?

    21:10 How did you personally decide to take on CFS?

    24:25 A fortunate accident

    _________________________________________________________________

    Let’s say you’re a biomedical researcher looking for a place to make your mark. You find out that there is still a major disease that affects more than 2 million people in the US, and we still know virtually nothing about this disease at the molecular level. Wouldn't that stand out?

    It certainly has to today's guest, Ron Davis, who is also a father searching for answers for his son. Ron has been the Director of the Stanford Genome Technology Center for decades. He collaborated on the first DNA microarray and made a major contribution to the Human Genome Project. For five years now, Ron has directed his comprehensive skill set in bioengineering--and his vast connections--to work on a cure for ME/CFS, or Chronic Fatigue Syndrome, a disease which has ravished his son, Whitney Dafoe.

    With no funding from the NIH so far (he says they're not good at starting things), Ron is working to characterize the disease at the molecular level. A new device developed at his center that he calls a "nano needle" could enable the first definitive diagnostic test for patients with CFS.

    The history of this disease is of patients desperate with hope but always facing a major stigma. Many medical professionals are still not on board with diagnosing a patient with CFS. Ron says this stigma and lack of interest by the research community has created a big chance.

    “This is a tremendous opportunity. Here’s a major disease which at the molecular level you don’t know anything about. This has got to be the last disease like this."
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    Thanks for posting this @JaimeS, really interesting and poignant at points
     
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Aside from all of the ME/CFS stuff he talks about investing in creating less expensive diagnostic tools for all of medicine. These tools would be computer programs to print circuits and tools to run tests in doctor's offices, potentially for pennies, rather than tens, hundreds, or thousands of dollars. These tests may even be more accurate, predictive, and useful than current test. He sees this as potentially transformative to medicine.

    Revolutionary! What a world, huh?!
     
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  4. AdamS

    AdamS Senior Member

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    This is great, thanks for sharing @JaimeS - Sorry to hear that you're feeling awful today too :(

    I had a listen to the interview and the following came to mind:
    • How brave Whitney is.
    • How lucky we are to have Ron helping us.
    • How awesome the tech sounds that he's developing.
    • How complex this illness is, there seems to be so much that is different/wrong in ME/CFS and hearing it from Ron kind of made it hit home.
     
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  5. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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  6. alex3619

    alex3619 Senior Member

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    Approaching two hundred metabolites and over sixty cytokines that are abnormal. None of these are standard pathology tests that doctors routinely run. The analogy I like to use is comparison with a stethoscope as a test for a brain tumour. If you detect nothing wrong can you conclude a tumour is not present? The right tests need to be run, and they need to be available. We are heading that way now.
     
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  7. *GG*

    *GG* Senior Member

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    yes, very nice. This seems to be along similar lines, and would help Prove the level of our disability, no Matter how normal we look!

    https://www.healthrising.org/blog/2...archer-got-involved-chronic-fatigue-syndrome/

    GG
     
  8. Sing

    Sing Senior Member

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    The part about their using salt to stress white cells from ME/CFS patients and then seeing abnormal changes in the white cells--I want to learn more about this. Dr. Davis simply calls this a stressor and didn't specify how it might be stressing the white cells.

    I want to say that I don't think this means that salt is bad for us. I think what it means is that with stress, our immune systems respond poorly. I already knew that, as with stress I go from having a disabling condition to being actively sick too.

    But if anyone understands more clearly what Dr. Davis meant or is discovering, let us know--
     
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  9. daisybell

    daisybell Senior Member

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    I love Ron Davis.
    Can I adopt an uncle???!!
    He's just so smart and so down-to-earth, and his ideas rock.....
    @Janet Dafoe (Rose49) can you give him a huge hug from me, if he would like it?
     
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  10. Alvin2

    Alvin2 Senior Member

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    Thanks for posting this, i hope their work in August works out
     
  11. BurnA

    BurnA Senior Member

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    There is a video on you tube where he discusses it in more detail and there is a thread about said video on here also.

    Think it is the patient update video.

    Basically the salt means the cells have to work.
     
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  12. alex3619

    alex3619 Senior Member

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    He did say they would not publish the data until they figure out what was going on. (edited)
     
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  13. BurnA

    BurnA Senior Member

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    I always considered this was a great possibility for diagnostic purposes but of course if they can figure out why it is diagnostic, then it will lead to a better understanding of the disease too.
     
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  14. trishrhymes

    trishrhymes Senior Member

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    I think the idea with salt is that any cell put in a solution with a higher level of salt outside than inside the cell will have salt diffusing into it. A healthy cell whose energy metabolism is working well will be able to pump the excess salt out again, but this requires lots of energy in the form of ATP. It seems that the ME cells fail that test, suggesting they are not producing enough ATP.

    Please someone correct me if I'm wrong.
     
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  15. Forbin

    Forbin Senior Member

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    Dr. Davis talks about this in this video, at about the point where there is about -7.15 minutes of time remaining.
    https://www.facebook.com/OpenMedicineFoundation/videos/956825444421877/

    I believe that he is saying that, when they add sodium chloride to a sample of white blood cells, the cells are "stressed" because they have to "turn on the pumps" to remove the sodium chloride from within the cell. The "pumps" utilize energy, which creates a demand for ATP.

    After about two hours, CFS patient samples showed an increase in electrical impedance which is not seen in samples from healthy controls. Dr. Davis likened this to seeing PEM at a cellular level. If validated, it would be an assay (test) for CFS, although Dr. Davis hopes that it will lead to a test which is easier to conduct.

    [ ETA: Cross-posted with @trishrhymes' post which says the same thing.]
     
    Last edited: Jun 16, 2017
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  16. TreePerson

    TreePerson Senior Member

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    I've had a listen to this. I love to hear Ron talk it's always such a hopeful positive experience.
    Something that caught my attention at the end was a reference to Whitney having briefly improved. Does Ron say that this improvement followed a fever? Or am I misunderstanding? I have been wondering why a fever would lead to an improvement.
     
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  17. dangermouse

    dangermouse Senior Member

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    Thanks for posting @JaimeS Ron is awesome :thumbsup:
     
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I didn't hear that bit (or have forgotten), but I, like many sufferers, almost always have a low body temperature, so maybe a fever indicates a (temporary?) improvement. See this thread for a poll about body temperature: http://forums.phoenixrising.me/index.php?threads/what-is-your-body-temperature-rethinking-98-6.1454/
     
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  19. TreePerson

    TreePerson Senior Member

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    Thanks. Yes I also have a low body temperature. I wondered if the fever might indicate a strong immune response which temporarily gets the better of something.
     
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  20. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Such a great interview.

    He touched on his experience with working in dedicated open minded teams, and that is something we really need. There`s to many teams who are too attached to prove their hypothesizes, unfortunately we dont yet have the data to make good hypothesizes.

    Crazy to hear how many standard deviations metabolites and cytokines are off, and the nano-brick(+) really sounds like could be a potential diagnostic. Obviously you would have to check if cells in other similar diseases also react the same way.

    I don`t hear many others in this field having the mindset of Ron, and so there are not many others I can see other than him who in the foreseeable future can touch on the causality of our parthenogenesis. Maybe the norwegians, but more likely related to treatment is my two cents.

    I can tell he would love to be part of a big government funded research group, help a hero out NIH!

    What do we need?..

    GOVERNMENT FUNDING!
     
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